Anonymous member question: coping with the wait

My baby was diagnosed with a rare genetic disorder and we are in the process of scheduling a d and e. Would appreciate advice on how to cope with the waiting.

I cry myself to sleep and then have nightmares about the procedure. Is this normal? Will it subside? I do not know how long I have to wait... The genetic counselor told my us friday afternoon and said she wouldn't be able to plan anything until Monday morning. Waiting for answers and to get the procedure done is so awful and I'm afraid it will only get worse.

Comments (6)

Not sure how long you have to wait, but I will say the waiting is the absolute WORST. Please be gently with yourself and your partner. The wise mamas on these board encouraged me to spend some of those final days singing to, telling stories, or talking to my baby. I did all those things and those memories of our short time together or very precious to me now.

Waiting was definitely very difficult. We found out on Monday and terminated that Friday. State law said we had to wait 48 hours to begin any procedures. Once it was over, the first days were the worst, and slowly we're moving forward. Higa to you.

My ob ultrasound was on Friday.
Longest weekend of my life. We had a few knowns for me to research.
They could not get mfm on phone until Mon. Mfm called to schedule it 10 days out... I lost it.
My nurse called the local teaching hospital and I got pushed in on Tues as she explained I was considering TFMR.
Mfm was tech scan, fellow scan, then attending scan...all the while my ob is sending me texts wondering what I know as 3 hrs have passed.
We then went straight to him. It was after 5 and we all kinda sat and cried and talked about options. After 3 hours of seeing layer upon layer of severe diagnoses let alone fatal conditions... We knew life was not an option. I remember my ob saying that he was perfect from the diaphragm down which is still a fatal consolation prize.

I survived by reading. Looking up how short of a life those who carried to term had. How being not hooked up to a monitor would feel during labor as the monitor was just watching when death occurred. Would I find peace watching him die knowing that labor was his death sentence? Would kick counts become mourning as 95% of kids die before birth. The feelings all lead to a hopelessness of things. It lead to thinking about having a meltdown often when a kind stranger asked how much longer? Or are you ready for it to be over? I could feel the venom in my replies even in my head. I could see myself becoming mean to those I love as u would dwell on the unhappy reality that sucked everything out of everything. I lived many lifetimes that weekend. I felt the life force drain out of me. I knew carryout to term meant a lifetime of mental health visits...prescription meds, therapy and having to explain to my kids what was happening and why mommy was sad. Death has only recently been discussed and Moana lead to it. How can you explain this garbage situation to a kid? I could not... I still don't think I could and my kids have aged over 2 hrs since.

This is the worst. Hormones after will suck too but the decisions and things will be over. Feel certain this is what's right. That will be your foundation as you waiver with the what ifs that will come later.

When I was notified of my cell free DNA results I had to wait 3 weeks for amnio to confirm and another ultrasound. Longest three weeks ever. It was hell. I also had nightmares every night. My anxiety was through the roof and I was emotionally a total mess. Once diagnosis was confirmed and ultrasound showed the severity of health problems, that was a Wednesday, and my procedure was Friday. After waiting so long before that, I thought maybe I'd be mentally prepared but I still wasn't. My d&e was one week ago today and it has been very hard. I've had moments of feeling ok, and moments of feeling like I cannot handle any emotion I'm feeling. I was prescribed Xanax, and I take just a third or so when I take it. It does help me. It slows down my panicked thinking, and allows me to just be in the moment and process. Because that's what it is. A process. You will have so many thoughts and feelings and you have to process them as they come. I can't give any advice other than that, as mine is still so recent. I don't even know what to expect from here myself... But you will be on my thoughts, and you're not alone in this waiting game and emotional rollercoaster. I'm so sorry you're going through this.

From initial ultrasound that showed alll the bad findings to actual d&e , it was a solid month. It was the longest, most painful time. The waiting, the unexplained (we didn’t get her genetic results until after the d&e), the grief..it was constant. During this time, I tried to find mindless things to read; celebrity gossip, heartwarming stories, true crime podcasts (I suggest: my favorite murder). I also started lining up therapy sessions and looking for other support services like this board group.

The waiting is the hardest part of it. The procedure isn’t as bad as your head is telling you. Try asking to see if you could be sedated so it’s a bit less painful and traumatic. Mentally and emotionally, it’ll be hard. You’re already stronger than you think. Big hugs and welcome to the only group where everyone wishes they weren’t a part of.

This Internet site provides information of a general nature and is designed for educational purposes only. If you have any concerns about your own health or the health of your child, you should always consult with a physician or other healthcare professional. Please review the Terms of Use before using this site. Your use of the site indicates your agreement to be bound by the Terms of Use.

This site is published by BabyCenter, L.L.C., which is responsible for its contents as further described and qualified in the Terms of Use.

You are passing a message to a BabyCenter staff member.
For the fastest help on community guidelines violations, please click 'Report this' on the item you wish the staff to review.
For general help please read our Help section or contact us.